Mine has been jumping around too. I have read that people can have high and low at the same time. I am hoping that means it is becoming more normal though. I use a low dose Clonidine Patch (beta blocker), electrolyte drinks and drink about 8 8oz glasses of water a day. If it keeps happening I may have to go down to .01 patch instead of .02.

I mentioned to Dr. Klimas that it crashed once and I had to vacuumthe house to get it back up. It worked but it was scary since mine is always high, especially with the slightest amount of stress.. She said when that happened to lie down put my feet up and drink an electolyte drink. One day recently I fet terrible, never dreaming it was the bp. I finally thought I should take it and it was low. I am very surprised by all this.

I have been doing earthing for about 4 months www.earthing.com and it is said to normalize bp, hope so. Wayne wrote about it some time ago.

Wayne, are you still earthing and did it do anything to your bp? Anyone else?

The book about it is very good and highly recommended by the well know cardiologist Dr.Stephen Sinatra. His son got mostly over EMF illness by doing it. They thought he was dying at one point.

I have high blood pressure and severe neurally mediated hypotension that can cause major bp crashes. I know of others with ME or CFS and high bp and POTS. In these cases two separate things are going on - one causes low bp, the other high. However, the cause of the low bp is intermittent, and the cause of the high bp is more or less constant. I do not think that potential causes of high bp have ever been really researched in ME or CFS. Bye, Alex

I get all the BP issues which come with ME (recently became aware that I can also get sudden BP ditch after being upright for too long too.. I get sudden nausea when that occurs), orthostatic hypertension (can happen for me within a minute of standing I can have a BP of 170.. my BP gets up to 170/138.. big sign of it for me is breaking out in a sudden sweat), orthostatic hypotension (I get when Im laying eg 80/59), narrowing of the pulse pressure (Ive seen this down to 7 or 8 .. this possibly causes some instant collapses for me)... I also get POTS.

My BP issues started off like most with ME..with only the common kind of hypotension but after long term ME, my autonomic dysfuction is very very screwed up. From my observations this shift to orthostatic hypertension or complete dysregulation is something which seems to be happening for many long term ME people (I dont think Ive known this to be happening in anyone who has had this illness short term). Maybe the shift into high BP is the bodies attempt to correct the BP issues? as the body naturally strives for homostatis. (or maybe its just a part of ME disease progression?)

Orthostatic hypertension bouts can be part of hyperadreneric POTS. One can have both low blood volume kind of POTS and an issue with the adrenaline or noradrenaline too which in turn can cause hypertension. So do consider hyperadreneric POTS if you have bouts of high BP esp if they come on suddenly or when standing. I feel sorry for anyone who has this conditon as it is so so hard to find a specialist who knows anything about it.. many POTS specialists arent even aware of this kind of POTS. (ive seen two POTS specialists and neither are aware of this kind of POTS.. my latest specialist wants to refer me again as he's at loss on what to do).

The adrenaline (which I suppose then causes the high BP) seems to be set off in us by low blood volume. Dr David Bell sometimes uses saline IVs to bring the BP down in his patients having hypertensive crises in this condition.. correcting the low blood volume..stops the BP hypertension crisis (of cause if hypertension wasnt being caused by this reason... giving saline probably would be dangerous in this situation). Unless a doctor is aware of this condition, you wont get the treatment you need in a crisis and possibly a doctor could end up doing something while trying to treat this cause of hypertension which may be very harmful. (i almost had a doctor put me onto BP lowering drugs for the hypertension when my BP is dropping to 80/59, possibly going even lower then that when Im sleeping).

Warning..orthostatic hypertension and severe up and down BP dysregulation issue can lead to heart failure. Ive come across 2 different (not ME) people who had this form of dysregulation who in which it went untreated, due to not being able to find doctors for it.. they both developed heart failure (one was quite young.. if im remembering correctly he was in his late 30s when he got the heart failure due to it). So if you have this happening.. keep trying to find a doctor for it. Since Ive had it.. Ive developed a couple of leaky heart valves.

I have hypertension and tachycardia. But my BP plunges and my heart rate shoots up and gets thready when I'm upright too long - cooking is the worst activity. While my low BPs don't drop below 80 over 60 when it's dropped from 160 over 116 I can bloomin' feel it! I feel sick and dizzy if I'm upright too long and my legs swell, especially feet and ankles and I get this weird red rash around my legs. Anyone else get the rash thing?
I struggle with breathlessness and a sort of air hunger when I'm upright and moving. Does anyone else get that?

My BP is all over the place frankly and I cant get my pulse below 96 unless I lie down. Unfortunately lying down effects my breathing, so I need to be at least partially upright.

I have hypertension and tachycardia. But my BP plunges and my heart rate shoots up and gets thready when I'm upright too long - cooking is the worst activity. While my low BPs don't drop below 80 over 60 when it's dropped from 160 over 116 I can bloomin' feel it! I feel sick and dizzy if I'm upright too long and my legs swell, especially feet and ankles and I get this weird red rash around my legs. Anyone else get the rash thing?
I struggle with breathlessness and a sort of air hunger when I'm upright and moving. Does anyone else get that?

My BP is all over the place frankly and I cant get my pulse below 96 unless I lie down. Unfortunately lying down effects my breathing, so I need to be at least partially upright.

I'm on candesarten for it at the mo.

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Some of what you said sounds like you have POTS. The weird red rash around legs.. can be a POTS thing... its caused by the blood pooling in the legs. There is some very good photos of this red rash thing in legs with POTS online (i'll see if i can find it for you and post the link to these pictures). Air hunger and breathlessness too when upright can also be part of POTS.

So from what you said it sounds like you have got multiple autonomic dysfunctions happening.

Shell..this isnt the POTS leg picture I was looking for but here's another one I just found (you need to scroll down the page a fair way to get to the photo http://www.ipej.org/0602/raj.htm

" A striking physical feature of POTS is the dependant acrocyanosis that occurs in 40-50% of patients with POTS (Figure 2). These patients experience a dark red-blue discoloration of their legs, which are cold to the touch. This can extend from the feet to above the level of the knees. The reasons underlying this phenomenon are not clear. The current data suggest that the problem is not due to increased pooling in the venous capacitance vessels, but rather due to decreased blood flow in the skin16 "

That's interesting as I always had thought the red mottling was due to the blood pooling but this says differently.

tanisaart1 - thanks for the link and the photo is JUST like my rash! When I was in hospital last month because of seizures one of the docs commented on the rash and asked me what it was and I had to admit I didn't know. The doc shrugged it off. My legs are always like slabs of meat from the fridge but as I as reynaulds I always put it down to that.

I am not medically dx with POTS as yet and I really dont want a tilt table test - but as I am under the NHS the chances of such a test are pretty low.

SOC - the only thing I've found to keep from things getting nasty is I take my pulse and once it's over 130 I sit down until it drops off to 120 or less, and then have another go.Not ideal advice I know. I also find the time of day helps - I now cook mid afternoon so I can take my own sweet time over it and have stuff that goes in the oven or slow cooker. All that fancy cookin' I used to love has gone by the wayside. I know it's not always practicle but just not standing up for too long is the only thing I've come up with.
I tend to reach a low point late afternoon most days and I try to avoid upright stuff then if possible.

Anybody know what the deal is with BP (and HR) increasing steadily the longer I stand? It's a linear increase, nothing sudden.

In 30 mins:
BP: 127/90 --> 160/105
HR: 95 --> 123

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SOC.. sometimes mine goes up fast.. other times it dont and the increased BP may happen after 30-45 mins of on my feet doing things .. happening in a slow raise like yours is doing. This slow linear increase of BP is the issue I first noticed with my BP. It spiking up very very suddenly.. it took a couple of years or so before I noticed sudden BP jumps going on so the sudden BP spikes I get now.. may not of been there originally when the high BP issues started. (maybe the sudden high spikes were a progression of the other?).

Its kind of unsettling to think that the autonomic issues may be a progressive thing.. (with me starting with low BP... then adding in POTS.. then also going to slow coming in orthostatic hypertension.. then going to sudden BP orthostatic high spikes too). Makes me wonder where my BP/autonomic dysreguation may head to next . Is there anything else it could do?

What if its now on its way to progress to something else?? and if so what? If I just suddenly died.. I'd think a likely cause would be due to something with this wacked out autonomic system. I can imagine "heart attack" being in a way wrongly put onto my death certificate.. what if my heart had actually stopped due to my autonomic system issues!!! and it not regulating my heart right? They wouldnt know by an autopsy if it was "autonomic failure" which caused my death. And till the time comes when a doctor will do a tilt table test on me (our main hospital got rid of its tilt table!).. most of my issues I have, potentionally serious, are going unrecognised as doctors havent listened. It truely bugs me knowing I could die with my issues still not recognised even then... forever ignored. (at least I now have a doctor trying to treat my POTS..but all the rest is still ignored.. no tilt table testing or autonomic testing done, orthostatic hypertension ignored).

Ive read that ME can be progressive.. could these things be part of that progressive progress?.

The autonomic issues in ME need to be way more studied!!

For me with the slow high raises up.. Ive found that as long as I then remain on my feet my BP will stay up, the only way to bring it back down is to stop doing things and go and rest.

I've read that ME can be progessive as well. As mine is progressing and as I get slowly worse I wonder if there is any evidence that this progress can halt - or even improve? I have got my head around how things are going and I am mostly at peace with it - but I can't help hoping it doesn't have to be this way.

SOC - the only thing I've found to keep from things getting nasty is I take my pulse and once it's over 130 I sit down until it drops off to 120 or less, and then have another go.Not ideal advice I know. I also find the time of day helps - I now cook mid afternoon so I can take my own sweet time over it and have stuff that goes in the oven or slow cooker. All that fancy cookin' I used to love has gone by the wayside. I know it's not always practicle but just not standing up for too long is the only thing I've come up with.
I tend to reach a low point late afternoon most days and I try to avoid upright stuff then if possible.

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Yeah, that does help. My AT is 125 BPM, so my HR monitor is set to alarm there. I sit (or lie) down if it goes off. Doing that really has helped me to not keep getting worse.

I'm going to try doing most of my cooking earlier in the day, as you suggest. I can't cook reliably at the moment because it requires too much standing and walking around. I'm hoping that if I do things by the very littles, sitting down, and early in the day (morning for me), I'll get enough of the work done that I can manage to finish it off at dinner time. That or hubby can do the last bit. We'll see. I see a lot of slow cooker meals and roasts in my future.

If I just suddenly died.. I'd think a likely cause would be due to something with this wacked out autonomic system. I can imagine "heart attack" being in a way wrongly put onto my death certificate.. .

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You probably are aware of the terms hypertensive urgency and hypertensive emergency - relating to BPs over certain levels, and the emergency being distinguished by certain symptoms. E.g., anyone experiencing visual disturbances should get to an ER. Or pain in the head, etc.

I have high blood pressure and severe neurally mediated hypotension that can cause major bp crashes. I know of others with ME or CFS and high bp and POTS. In these cases two separate things are going on - one causes low bp, the other high. However, the cause of the low bp is intermittent, and the cause of the high bp is more or less constant. I do not think that potential causes of high bp have ever been really researched in ME or CFS. Bye, Alex

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It seems this is the only one similar to me - me starting with sudden onset hypertension and orthostatic hypotension. Any thoughts on the mechanism? It took me over a year to get my BP back to normal, maybe two years. When I get sick, my BP is also usually up again.

I had always previously had a pretty good NO response to exercise. When I first got sick, that NO response didn't happen anymore. But it does now again... usually.

Since I'm not consequently awash in ONOO-, that possibly affects exercise tolerance.

Anybody know what the deal is with BP (and HR) increasing steadily the longer I stand? It's a linear increase, nothing sudden.

In 30 mins:
BP: 127/90 --> 160/105
HR: 95 --> 123

Click to expand...

My orthostatic hypotension (not hyper) was immediate upon standing. After a few seconds, I'd normalize. There were also a few times when, after standing still for awhile, I'd start to get nauseous as if I was going to pass out. Simply moving would normalize things.

But it sounds like your system responds by compensating with higher and higher BP and HR to keep supplying your brain - maybe the amount of blood pooling in your legs steadily increases? Do you get steadily increasing edema?

A person who is hanging from a rope attached to a safety belt will pass out rather quickly, simply because they cannot take the pressure of their whole weight being borne by the midsection. So elaborate harnesses were invented instead, in which case the suspended person will pass out after 10-20 minutes or so - because the legs being suspended don't return the blood up through the veins so well. That's true in normal, healthy persons.

I've read that ME can be progessive as well. As mine is progressing and as I get slowly worse I wonder if there is any evidence that this progress can halt - or even improve? I have got my head around how things are going and I am mostly at peace with it - but I can't help hoping it doesn't have to be this way.

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I hope I don't sound irritating but I've gotten steadily better over my four years. But I'd never had ME symptoms, only CFS.

My normal is around 130/85, but out of the it will shoot up to 165/110. It want stay there long and back down it comes, but it does seem to coincide with anxious spells or when pain episodes flare up. I have been under a long period of much higher than normal stress.

If you think subsets, I am more of just totally uncontrollable sleep, severe pain, occasional dizziness and vertigo (no change in blood pressure during spells) and never ending hormone fluctuations. I have never had an episode of POTS or NMH.

Having NMH and/or POTS or not having them seems to me, from just reading on the forum, as one of the big divides between us. Of course there are plenty of other things, but this stands out to me.